Alternative Options for Families Facing Congenital Anomalies
Baby Loss Awareness Week (UK) and Pregnancy and Infant Loss Remembrance Day in the USA (15th October), aim to support bereaved families who have lost their pregnancies and infants, as well as raise awareness around baby loss. 50% of people in the UK are affected by baby loss, whether its miscarriage, stillborn or a death categorised as other, of a new-born baby.
Abortion isn’t typically included in conversations around baby loss. This is because the crux of the abortion movement centres around the foetus not being considered a baby, due to the emotional state of the mother. The abortion movement, in essence, defines a baby as only a baby if the mother defines the foetus as such … life is not considered a stable fact of biology.
Where abortion is considered in conversations around baby loss is in Termination For Medical Reasons (TFMR). TFMR is also known as Pregnancy Termination Due to Foetal Anomalies or Congenital Anomalies, and the criteria for this isn’t applied consistently in all medical contexts. The conditions that give rise to to TFMR can range from the absence of core organs, such as the brain or skull, or to those with genetic disorders like Down’s Syndrome. Spinal disorders, such as spina bifida also commonly fall under the criteria of TFMR.
For parents, TFMR is a heart-wrenching decision, and medical professionals purport that the option is given to limit the suffering of the unborn children. Though there is no empirical evidence to suggest abortion does not cause suffering or pain to unborn children, the assumption medical professionals make is that the natural death process for children with disabilities is worse, principally because of the level of medical intervention required to ensure the child is comfortable.
Irrespective of the debate around suffering, the emotional and physical toll on families when TFMR is advised is immeasurable. Families are left wondering if they are being selfish if they wish for their child to live, or hope for their child’s recovery. Additionally, the inconsistent application of TFMR, and the increased prevalence of conditions that can lead to TFMR, calls into question whether this approach to congenital anomaly is the best for health.
As an alternative health coach, I view the acceptance and sanctity of death to be a natural part of human life. I believe that foetuses possess individual souls along with their own distinct genetic makeup from their parents, leaving others little right to diminish or end their lives. This is my belief in keeping with the death penalty and euthanasia, that premeditated murder is always wrong, irrespective of context.
Therefore, I am concerned about the loose definition of foetal anomaly that gives rise to TFMR abortions. Frederica Mathewes-Green, a pro-life feminist found in the anthology “Pro-Life Feminism, Yesterday and Today”, wrote in 1991 around euthanasia:
“…when people aren’t dying - when they are only disabled or recovering or even merely old - we want to offer them loving support till the end. It may not make for a neat, tidy society where everyone is productive and attractive. But it does make for the only kind of humane and just society that we can imagine.”
If you apply that consideration to unborn children with congenital abnormalities, is TFMR then, more about sparing parents the pain of having to rear a child with disability, rather than sparing the child from suffering? As the child can not speak for themselves, we are only to assume that each and every child would prefer to have their lives ended. A 2006 review of the literature in the Primary Care Companion to the Journal of Clinical Psychiatry found:
From these data, the rate of a desire for a hastened death among terminally ill patients ranged from 17% to 45% (when including those with a fleeting desire to die) and depended on the population studied and the way it was evaluated.
So would these children with disability, or severe foetal anomaly, actually opt to be killed rather than die naturally? Would they not benefit from taking their first breath? Would they not benefit from seeing their mother or father at least once? We honestly have no way of knowing, but we can extrapolate from the above numbers that a great many children may want to have the option of dying naturally, but that option is taken from them in TFMR.
Termination for Medical Reasons: Possible Eugenics Roots
On average, this type of abortion accounts for 2% of abortions in the UK, termed Ground E abortions. It’s not easy to find statistics in the US, as the CDC doesn’t separate TFMR abortion from other abortion types like in the UK, but it’s thought that about 1% of abortions in the US are for medical reasons.
Terminating a pregnancy for medical reasons often occurs when the developing foetus presents with congenital anomalies that threaten the baby's life. A nearly negligible amount of abortions are pregnancies terminated because the foetus threatens the life of the mother. The UK’s Department of Health tracked in 2021 that abortions to prevent harm, injury or loss of life to the mother only account for 0.05% of abortions (111 out of 214,256). Given the parity in abortion statistics between the UK and US, we can assume that number would be similar for the US.
Therefore, 99.95% of the reason for TFMR is around a diagnosis of a child’s disability while the mother is still carrying the child. And the greatest reasons given to parents who become aware of this congenital anomaly will be the affect on the child’s “quality of life and prospects.” Quality of Life is an actual medical concept, but it’s been met with criticism based on “entirely false premises”, and it’s lack of uniformed definition. The definitions proffered by the WHO and Quality of Life academics rate what’s considered a high quality of life, not based on what is intrinsic to the person, but the value system of the culture, or how much someone can “contribute” to society.
Unnervingly, the level of contribution to society has long been considered a key, fundamental aim of Eugenics.
Francis Galton, one of the most famous eugenicists of the day, wrote in 1909:
The aim of Eugenics is to bring as many influences as can be reasonably employed to cause the useful classes in the community to contribute more than their proportion to the next generation.
Eugenics has long obsessed with “perfecting” the human species, eliminating substandard traits to replace with “superior” ones, based on unscientific selective breeding techniques, that included everything from legal coercion to sterilisation techniques. There is much discussion about the book “Eugenics, the Science of Human Improvement by Better Breeding” by CB Davenport, written in 1910, which speaks extensively about how people procreate. Yet, most active writers of Eugenics were writing before there was abortion as a means of eliminating the poor, criminal or disabled from society.
Galton goes on to say:
The first and main point is to secure the general intellectual acceptance of Eugenics as a hopeful and most important study. Then let its principles work into the heart of the nation, who will gradually give practical effect to them in ways that we may not wholly foresee. [My emphasis].
Eugenics, it should be remembered, is focused on the premise that value is based on how much you can contribute. Galton and other eugenics referred to people with poor eyesight, intellectual challenge and physical disability as holding back the “enhancement” of the human race. Along with notions of racial inferiority of black and other ethnic groups, was a strong hatred of people that the eugenicists felt diminished human potential. They often spoke about the financial costs that “inferior” people brought on society, and questioned the contribution of disabled persons in society.
People often make the case that evidences the contributions of others in society as justification for why they shouldn’t be killed, which is an extension of Galton’s “general intellectual acceptance of Eugenics.” In a report to US Congress on the high prevalence of Down’s Syndrome TFMR, the authors felt a need to state, “while the inherent value of people with Down syndrome is not affected by their contributions to society or their perceived quality of life, it is nonetheless important to document that these contributions are substantial.”
But the most frightening element of Galton’s quote, is where he states the “practical effect to [eugenics] in ways that we may not wholly foresee.” Could TFMR be a practical effect for the disabled and severely disabled? Some of the most commonly identified conditions for TFMR include:
Anencephaly: A neural tube defect where the baby is born without parts of the brain and skull, usually resulting in stillbirth or death shortly after birth. These children are made as comfortable as possible prior to dying.
Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards syndrome), and Trisomy 21 (Down syndrome): A high number, 80% of children with Patau syndrome (pronounced pa·tau), will die by miscarriage or stillbirth and 10% will live to their first birthday. Similarly, Edwards syndrome has a low survival rate, but of babies who survive until the third trimester, 40% will survive labour, and go on to receive supportive care. Like Patau, 10% survive until their first birthday. Children with Down’s Syndrome go on to grow up and live independent lives into their 60s, but due to the intellectual disability and some cardiac and respiratory issues, often will require some support. Despite their potential for a full and enjoyable life, 90% of women whose unborn child is diagnosed with Down’s Syndrome choose to abort.
Congenital heart defects: Severe heart abnormalities that can severely compromise the baby's overall health, often necessitating surgical intervention soon after birth, or could lead to immediate death. For example, in this case on Tommy’s, a pregnancy loss and research charity, a family was given one week to decide whether they would continue the pregnancy for their child, or choose TFMR. They chose TFMR because “We decided that it would be unfair to continue the pregnancy, knowing that our baby would suffer when born, and would need such invasive surgery at such a young age.”
Neural tube defects: Conditions like spina bifida can lead to paralysis, intellectual disabilities, and other complications. Spina bifida can be mild to severe, making the difference between a child dying early in life, or living well into adulthood. Despite this, TFMR can be indicated in neural tube defects, despite prognosis being individual to the case.
Cystic fibrosis: A genetic disorder affecting the respiratory and digestive systems. Healthcare has advanced considerably, and those with cystic fibrosis on average live until their mid-40s. Despite this, TFMR is suggested when the condition is picked up in antenatal screening.
The above diseases show a range of prognosis - some of which indicate the chance of a happy and full life, especially when considering Down’s Syndrome and Cystic Fibrosis. Some other conditions are extremely traumatic for the baby, with many not surviving past their first year. But I ask the question again - who are we to decide the fate of another human being? There are conversations around the rights of children to make decisions about their health, but somehow, we take the initiative to counteract the normal dying process, not based on the wishes of the baby, but the cultural norms we live within. We are left to trust medical professionals in their assessment of our children’s suffering and their wishes. And we do this blindly, without questioning the roots of these assessments.
Is TFMR an Unnecessary Component of Baby Loss Trauma?
I can’t begin to comprehend how traumatic a diagnosis of a congenital anomaly would be. For a pregnancy to be in jeopardy, a baby already in danger before they’ve even left the body, is deeply heart-wrenching and emotionally traumatic for parents. Feelings of grief, guilt, and sadness at how their child became ill will undoubtedly terrorise parents. And then they are offered a choice that no parent should ever have to face. The confusion of whether or not you made the right choice, and the isolation due to societal stigma compounds the emotional toll of their loss.
But is the existence of this procedure making things harder for parents? If we lived in a society that honoured natural dying in the same way as natural living, would parents be more appropriately supported? If we had a society that didn’t measure quality of life by superficial productivity, but instead, measured quality of life by love, wonder, beauty and spirit, would there be more space for disability?
Coping with the trauma of termination for medical reasons is incredibly challenging, and potentially unnecessary. Continuation of the human species is not expected to be perfect each and every time. There will be variance, and sometimes it will fail. Abortion seeks to hide this failure, as if it’s something to be ashamed of, as if it is a tragedy in itself. But that’s not natural to the cycle of life and death. That’s sanitising existence beyond what is necessary, and traumatising families in the process. When faced with a child with congenital anomalies, counselling could focus how to strengthen the family to handle this unexpected outcome. Holistic approaches such as herbal remedies and homeopathy could be used to balance mood and strengthen the mother. Spiritual support, through religious or other God-aware practices can guide parents into the wider meaning and message in this congenital anomaly.
Instead of seeking to erase the problem, we can choose to go through it, and truly heal and learn.
Conclusion
This article was not intended to stigmatise or re-traumatise anyone who has experienced TFMR. Termination for medical reasons is a complex issue that affects countless families worldwide, and the suffering is unimaginable. As I write this I send love and healing to all who are affected, and pray for you and your families. The choice you made, was one out of love, and care - don’t ever forget that. You loved your children and wanted the best for them. This was not a decision taken lightly, but one taken based on the information you were given.
Ongoing research is vital to eliminate the option of TFMR. We know that folic acid deficiency plays a big role in the onset of neural tube defects, such as spina bifida, and obesity and drug use (including pharmaceutical drugs) plays a role in the appearance of congenital anomaly.
We also need to do more to improve the lives of children living with congenital anomaly. Understanding the causes, prevention, and treatment of these conditions is crucial to improving outcomes for affected children. Research funding in this area has been a mixed bag, with periods of both stagnation and growth. This is because society has deprioritised cure in favour of elimination of the problem. By keeping these children present, we can ensure governments and researchers focus everyone in society.
We need to understand the role of prenatal screening, as a way to prepare us for our children, not prejudge, Advancements in genetic testing has been remarkable, particularly in the field of naturopathy, but it shouldn’t be used to genetically cleanse humans from existence.
Death is so painful for the living. A child dying before their parents is considered an abomination in African culture. The worst pain imaginable is that of baby loss. But remember, when babies die they are simply going home.
“When it comes time to die, be not like those whose hearts are filled with the fear of death, so when their time comes, they weep and pray for a little more time to live their lives over again in a different way. Sing your death song, and die like a hero going home.” – Chief Aupumut in 1725, Mohican.
